Trinity's Surgery

Hello all, I have finally been given the OK from my daughter to talk about this. She is slightly self conscious about it so now everyone knew. I will cut and paste the updates though as some of them are long! I am sorry I didn't give updates to everyone, I hope you understand, but we are finally home and she is doing well!!!
Friday July 8th, 2011
Update 1:
She has been in for 3 hours now, he has put in almost half of her screws along with the rods on both sides, and after the second half of screws are in, they will start putting in bone protein in between the vertebre, which will harden, but not rock solid as she has to have some movement. She has had only minimal blood loss to this point.

Update 2:
Screws are all in, rods need repositioned a bit, then some cross connections but the spinal response is great, and has needed no blood yet.

Update 3:
They are closing her up now! Yay!

Update 4:
She is in her pediatric ICU room now, waiting on them to get her checked in...she looks so amazing after what she just went through!

Trinity is really doing super super great! The nurse she had in the ICU said that she was the fastest progressing fusion patient she has ever had in the 5yrs she has been here. As stated before, we had a slight issue with her BP Friday night, but we know now her body does not require as much valium to relieve the spasms in her back.

All day today she has been on her own medication wise. She has a button she pushes if she needs to. She has been going 2-4hrs without hitting it once, then she willpush it 4-5 times in an hour (she is allowed to push it every 8 mins) and she will go bak to not touching it for hours.

Last night at 2AM (she had not had any pain meds for 4hrs at this point) they asked her what her pain level was and she said it was a 2!!! WTG BIG GIRL! They do make it to where she has to lay on one side for 2hrs, then her back again for 2hrs, then back on her side etc...and have told her it makes it easier to roll over if she pushes her button first, and she says back that she is good and does not need it!

Now this morning they had to sit her up for 5 minutes, and dear lord I am shocked it didnt wake up the whole hospital...she hurt so bad doing that and screamed so loud it made me drop to me knees crying in the middle of her room BUT then tonight she had to sit up in a chair for a total of 30 minutes, (meaning she had to stand to to get from bed to chair) and she did it with flying colors! It was awesome! AND I got a pic too...ill share hopefully tomorrow!

Having said that....tonight she has had enough. Enough breathing treatments, enough rolling, enough poking and proding she has flat out refused to allow them to do anything else LOL. they do it anyway of course and she cries

One thing I dont' think I had Chelsea mention is that she has 3 drains in her back drining blood and fluid from around her spine so the chance of infection is dramatically decreased! They empty them every 4hr, and just now when they emptied them again only 1 of the 3 had a measurable about of fluid in it! YAY!

she is at this time running a fever though 102.4, so off to get some tylenol, and they are also getting benadryl for itching fromt he pain meds. The thing that is making me angry is everyone is teasing her....she has been asking for food since 2AM this morning (Sat) and they said that she can have some once she gets out of ICU. Well the Dr then said that she cant have food til monday, but whenshe got to her next room they would give her a supplemental nutition IV to curve her appitite a bit...and well when she got here, that was the first thing she asked for and they said she can't have it because she does not have a central IV line! BLAH!

as for Me, Littly one is doing well, VERY active, but with all the walking I have had to do to the bathroom the last couple days he is hurting me like crazy (just so low and the pressure is horrid). Now that we are in her room she will be in until she leaves the bathroom is right here, and I feel much better. I have not slept in 4 days now, but she is super comfy tonight and they are nearly done with her for 4hrs, so I am going to sleep, and so is she!



Sunday July 10, 2011


Well, I wish I could be as upbeat as yesterday, but after the night/day we have had I just don't have it in me.

I still have yet to really "sleep" starting to wonder what that is now LOL. I get to sleep, then 15-20mins later she is calling for me. I don't mind of course, but I am so tired.

She is showing her stubbornness, and it is not a good thing. Every 2hrs they have to put her at a 45 degree angle on one side or the other, then she is back on her back again for 2hrs. Every single time last night they turned her she screamed, and then cried for 2hrs straight. She was pressing her pain button, but it was not helping her at all. No one could do anything until Dr came in this morning!

So the Dr finally shows up at 630, and he just says he will have the pain guy come by. BLAH!

Anyway about 10AM the pain guy came in finally and he was really upset no one had called him before. she was so happy yesterday, and then in the night her sore muscles started to kick in overdrive, and she hurt so bad nothing was helping her. She BEGS to be put in a chair (sitting up) verses having to lay on her side. While he was in here he almost doubled her dose of pain meds for when she pushes her button and she immediately got super comfy!

Since then though she has flashbacks of last night and the button not working that all day long when they come in to turn her she starts crying and screaming before they even touch her. It is so sad it makes me cry. FINALLY this last time they turned her on her side (at 6PM) she still screamed, but I kinda got a bit loud with her because she REFUSED to push her button for pain saying it didn't help and she still hurt no matter what she did. said if she didnt push her button they would see how much it hurt to lay like that and they would turn her back on her back! I turned to her and told her that she is torturing herself (she interrupted saying they are torturing her) and I said she had 2 choices 1) push the button and be comfy for the 2hrs she had to stay there, or 2) don't push her button and cry th whole 2hrs she was on her side. She finally did push her button and within 20mins she was sleeping. They came in to bathe her, and I asked her if she was still comfortable, and she said YES my button is working mom! Thank goodness!!!!!

They did finally start letting her have clesr liquids...broth, jello, juice, water, and sprite. And she is one happy little girl and even made the statement that her jello tasted like spaghetti (She would take any for of food right now I think LOL)

All things given I sincerely hope tonight is better and I can finally get sleep...my eyes are twitching they are so tired. Visine has been my best friend!!! And I have cheated, drinking more than my just one cup of coffee, but I can not help it



Monday July 11, 2011


Oh my did Monday start of super bad. She woke up @4AM, after only been sleeping for 2hrs. She needed to *try* to go potty (they still have cath in her at this time, but she had not had a BM yet, sorry if that is TMI) But she could not go. This exhausted her to no end and when she got back to bed she was out. But her Dr was coming in @530AM, and she needed to be standing when he came in the room. She was so tired she cried because they made her get up. She was in so much pain too that she screamed so loud it took her breath away He said she looked good and could maybe gor home Friday, but probably Sat.

They had drawn blood already and I found out at this time her blood count was really low. She needed no blood during surgery, sot his struck me as odd, but they assured me it was not unusual. They said that it was low the day before, but even lower now. I asked why we were not told of it being low until it was so low they had to infuse 2 pints of blood to bring it back up, (this was an all day job...took 6hrs to complete) the nurse said it was because it was not horribly concerning until that morning.

I addressed her pain situation with him and informed him that they had not given her her muscle relaxers since 11AM the day before, he said why not. I told him I was not sure but they always sked her if the pain was constant or if it came and went(like spasms would) and she always answered its constant, to which he said YEAH 18hrs or so without the relaxers will do that, they no longer spasm but are in a sonstant spasm pattern. He semi laid into the nurses who then tried to turn it on me and tell him that I said it was fine to not give it to her. I quickly corrected her and reminded her it was ok for her to not have BENADRYL, but I was asking if she could have her muscle pain meds and they would talk her out of it. They conceeded and remembered that, apologized to me and Dr, and Trinity. Said it would not happen again.

@930AM physical therapy came in to get her moving a bit more, and she screamed again, just could not be comfortable at all. This was no fun because she was fighting the therapist and making things way worse Made me cry my eyes out again (d*mn hormones)

@10AM the pain managgement people came in and took her off her pain pump, she had been telling them it did not work. They had her on Oxycontin 12 time release already, and her pump as needed. So the pump went and was replaced being replaced with oxycodone that she would get every 3-4hrs as she needs it, plus keeping her muscle relaxers! With pain pump gone and oral meds in her system she is smiling and laughing and having a great time

@11AM they started her blood infusion, and after just the first one she was pink in the face and lips again, and so cheerful adn full of spunk it was awesome to see!!!!!

@about 5PM was when the second blood infusion pint was empty and she was just utterly different. she was back to being the Trinity I know!!! It truly is amazing how the smallest changes make the world a brighter place!

When it was time for physical therapy the second time, she got up smiling and was walking with her walker almost unassisted and happy to do so too. The PT lady was beside herself with how different she was from just that morning!

And Monday night MOMMY FINALLY GETS SOME SLEEP! She did wake up more than she had, but she didnt stay awake for long like she had before. She would get moved up on her side because her back was no longer comfy, and she would go back to sleep. It was so nice!


Tuesday July 12, 2011

5AM Started off a bit strange. She had had darn near all the veins in her right arm blown already from horrid needle sticks, and they needed to check her counts again, and the Dr requested results before he made his rounds!! so one lady pokes, and misses....she goes to get someone else who pokes and misses also. They all decide that they will just do a finger stick and use drops of blood. And they prick her finger, and can not get it to bleed enough....so the lab lady comes up to try, and she too pricks her finger get plenty of blood, but by the time it gets tot he lab, it had clotted and they could not use it! They had to put in an order for the IV therapy people to come up to get her blood drawn. They got in here @ 9or so and they were in here maybe 2 minutes, found a vein, stuck it and got it and poof gone! But her counts were better than yesterday after infusion.

They took out cath this morning also WOOT! one more less tube!

She finally got to eat REAL people food....and she chose cheesy fries as her breakfast LOL silly girl. But she ate them all

She is still on oxygen when she is sleeping only. She is perfect when she is awake, but the second she goes to sleep her stats drop to 90-91 and set the alarm off. Its never lower than that, but they wont take her off of it yet!

We stil have not seen physical therapy yet today and asked what the deal was over 2hrs ago and no one has gotten back to us yet...interesting. They are about as good as a hole in the wall when you ask a question i tell ya!

And she gets to go home Thursday evening! YAY! Provided things continue on th epath they are on now...she has been a LOT more mobile last night and today so they feel that with the more prequent getting up to potty that she will be fine to go home Thursday instead of Friday or Sat! This makes me super happy!!!!!

Rest of Tuesday update

Little miss aparently did way too much yesterday morning, and had a very rough few hrs between 6 and 11PM, the pain was so intense and it was just not time for more meds that all she could dow as cry. Bad part of course was that makes it worse becuse it tightens up all her muscles Once her muscle relaxer kicked in, she was a bit better, then an hour later she got her timed release medication, and then an hour and a half later she got her every 3hr medication, and she was great. Slept til 5AM very comfortably! I got to sleep from 1130 til 5, that was awesome considering the previous few nights!

Her IV vein blew though, and we were afraid that she was going to have to get another one, but since she is taking all her meds orally, it was not necessary. She has no more wires attached. No pulse/ox machine, no IV, no cath, no oxygen, no nothing! LOVE it!

Wednesday July 13, 2011

As I said, she slept which means I got to as well, so that was awesome! And this morning she stayed up from 5 til about 11 we played games and talked about a lot of random things! She did her Physical therapy like a champ and got her reward for walking up and down stairs! She is sound asleep now, but I am sure she will be up some this afternoon just as perky!

We still get to go home tomorrow! YAY I am so excited, can not wait!


Thursday July 14, 2011

We were released to go home about 1PM, and we got a little down the road and Trinity decided she was hungry. So we stopped to eat.

We also had to stop and get a new fish since her fish died while we were there....weirdness

Then I had to grab a couple things at Wal-Mart, but we got home about 6PM or so. She did really well, only took meds once while we were driving.

She fell asleep about 9PM, and aside from me waking her to take her temp (which spiked to 101.4 but is gone now) and waking her to make her lay on her side, she did not wake up at all. We are sitting at 1045AM right now and she is still sleeping!!!
Bless you all if you got this far!!!

Before and after x-ray pics